I struggled with similar issues at my mom’s facility. There were definitely things that I felt that I should be able to decide as the agent that were at odds with the facility’s rules and regulations.
If I were in your shoes, I would be having the hospice nurse coordinating with the facility and advocating for your wishes. They can also be the middle man with the prescriber.
When my FIL was put on hospice, the AL no longer had any prescribing responsibility. They simply administered what the hospice doctor prescribed. We were not happy that the hospice doctor wouldn’t listen to the family. H & his sister chose to replace the hospice with another hospice organization, and they actually listened to the family. Remember that it’s okay to switch to another hospice if things aren’t working for you.
The hospice is fine @kelsmom. And @momofboilier all of that exists now, it’s just that it was a weekend and the drug was making my mother craaaazy. Hospice already cancelled the med but that was two days after I declined on Sat.
As an invoked proxy who takes my mother’s place, I feel it is reasonable to think I can decline a med on a certain day. I decline PRN meds with no issue:in fact they are required to call me first.
Aside from that, there is an emotional effect to being ambushed like that.
I can appreciate feeling emotional when the people you think are on your team ambush you. I’m sorry that happened!
There should be a hospice nurse on call 24/7. Shouldn’t matter if it’s Saturday, Sunday or the middle of the night. Don’t hesitate to call them if you need back up with the facility.
Sending hugs!
Very sorry about this new development. Wishing you some rest
Again, I did call hospice, both of the days that I declined the meds. I told the AL that I contacted both pharmacy (about safety) and hospice, on Sat. and Sunday, and also met with hospice nurse on Monday.
It seems my mother has a UTI. As always, I picked up on this possibility, and requested the test. Neither the AL nor the hospice thought of this and in fact, without my presence, noone would have observed the crazy behavior (except the aides). It really gets frustrating to be indispensable and have to be vigilant.
@compmom I am so sorry they let you down and are not listening appropriately. It is exhausting to know so much relies on you, I think. People , meaning to be encouraging, would tell me “how good that you were on the ball” and all I could think was “that means if I blink and miss it, bad things could happen” (S2 was gravely ill for almost a whole year)
Hoping for a smoother, and quieter day for you and your mom today.
My mom had a staph infection (MRSA) that the hospitalist not only missed, but refused to check for when I told my dad to ask. I had to spend hours at work trying to track down the hospitalist and make her understand that I wasn’t requesting … I was telling her to do it. It came back positive. I am still bitter more than a dozen years later.
@greenbutton exactly!
I am looking at other facilities because assisted living is just not working. The administrators at this one, including the nursing director, are known by all I have met to be unfriendly to families. They also never interact with residents. But the model of AL assumes some competence and half the residents don’t seem to be competent.
That said, my mother loves her window , has routines that are familiar (when she is up) and friends who have known her a long time.
The aides are pulling their hair out and also telling my mother to give me some rest 
For others reading this: wish we had done a continuing care retirement community. My mother thought they were too big. There is no open spot in memory care where she is.
Thanks all. I realize have trauma from dealing with public school with a kid with serious health conditions. I realized that plays a part when I react to the “ambush” like yesterday’s. My kid was not always safe and vigilance on my part made sense. With a parent who is 95 with dementia and mostly ill and miserable, maybe the stakes are lower but I can’t help myself!
I think your feelings are very valid! This is your team, your mom has been there for a long time, and you’ve done way way more than the average family member. They are frankly lucky that you do as much as you do.
My mom was in memory care for two years when her ALZ advanced. By the time it was more end stages, we needed to private hire caregivers. The facility just wasn’t staffed to provide as much one on one care as she needed.
Once you have experienced vigilance trauma (it’s all up to you! All the time! who knows who is paying attention and who isn’t!) it is extremely difficult to feel safe and confident in outcomes. I have told people it is like walking around on carpet, knowing that someplace under the rug there is a trap door.
Investigating a more collaborative facility seems like a next best step. This one seems to no longer be a match for the situation. Remember to breathe
You absolutely have the right to refuse medication on behalf of your mom. If you aren’t already become familiar with patient’s rights (both federal and state). Sounds like the facility needs a copy too.
Thank you @gouf on the confirmation of what seems only logical: that I decline meds for my mother as her agent because she is not competent to do so, and legally I act for her.
@greenbutton “vigilance trauma”_ a term I have never heard. Wow! Years of vigilance for my kid (now independent of course) are really just embedded in mind and body!
@momofboiler1 thanks for the response. Most facilities for memory care are full due to a pot-COVID flood of admissions so yes hiring companions in addition to me, my brother, hospice volunteer/aide/nurses, and hospice Reiki may be the answer for now.
Daughter is visiting, new job, new apartment in NYC, so refreshing to hear about exciting new things with life ahead!
@kelsmom so sorry that happened to you…
You deserve consideration and respect from your family member’s providers. Whether it’s your child or parent there are stakes for the patient, but there are also stakes for you.
Hope you find answers for your mom. Nice to hear of your daughter’s happy milestones!
Just here to say that next week we are closing on my 99-year-old MIL’s house that she has owned and lived in since 1948. It’s been a years-long process. House is in major disrepair and was filled with every item that ever entered the house since 1948. Seriously, items came into the house but never left. It cost us $15k for a clean-out service, plus $4k for a licensed hazardous waste removal service (don’t ask). The saving grace is that it is located in a highly desirable area and we had lots of offers despite the condition. The end of a long chapter.
Of relevance to this thread:
@brantly
Good job. I can relate although Grandma moved in 1960’s and was very clean. It was when she became demented and Mom moved in that it was more of a hoarder house. Just jealous you are actually done. Mom has been gone 5 years. We sold the last of her estate in 2020 and I am STILL trying to get the leaseholders to pay the rent to the new owners. I just WISH it were the end of a long chapter.
Hello all, checking in to say that I successfully transferred my dad’s Medicare Advantage plan from the Seattle region to our region.
He (so far) has not gotten covid from his soon-to-be ex.
And he is still coming. His next Keytruda infusion is Friday. His insurance switches over on Saturday. Gulp.
We painted a bedroom and moved furniture around and got a normal-size bed in the room that will be his, so no more fall worries (other than the usual ones).
My back is killing me from all the hauling of Stuff - it’s like a Jenga puzzle to fit everything and leave a whole bedroom newly empty. But I feel good about it; Marie Kondo would be proud. Several donation trips and contractor bags of crap to the curb.
In the middle of all this, my D19 turns 21 this weekend and we have bought her a new car. (2008, the best we can do ) This meant driving six hours RT to pick it up, as it’s not an easy-to-find model. Then we drive it down to Morgantown to surprise her on her birthday - six hours one way, so 12 hours RT.
And next weekend we take S23 on a couple of college tours in Cleveland, another six hours one way, 12 hours RT. In between these trips, I’m still working full time and hauling Stuff around the house.
I’m so tired.
@Gatormama I can’t believe you had the energy to even type all that. You certainly know how to get stuff done,and that will be good when your dad is adjusting to the move.
We are beginning the cleanout of the home DiL grew up in. Her mom passed away unexpectedly in July; an unstable person with hoarding issues so the next two days are just the hazmat guys, then a contractor to assess the damaged interior. I keep counseling patience while,not actually having experience being patient.
My parents went to get their covid/flu shots and Dad had not seen he needed a confirmation code, so they drove back home to get it and reschedule. It amazes me how complicated it is, but at least Mom cancelled the appointment Dad made for evening, when she can’t see to drive. They’ll try again today.